This week on our chronic illness podcast, Invisible Not Broken, I interviewed a woman who has Crohn's Disease.
Learn about what a diagnosis like Crohn's can be like in college, dating with a chronic illness, the Canadian healthcare system, parenting with Crohn's Disease, and the upside of chronic illness: the toxic friend cleanse.
What is your disorder? *
At what age did your disorder become a daily issue? *
Who were you before your illness became debilitating? *
Adventurous World Traveller
What would you do if you were not dealing with your invisible illness? *
What would you like people to know about your daily life? *
I'm never quite sure when I wake up how the day will be. And I'm afraid of food.
What would make living and moving in the world easier for you? *
Ingredients lists on everything!
Do you have any life hacks? *
Lots. Most involve being really honest with people who need to know, and yet being subtle and discrete around the grossness with those who don't. It takes an incredible amount of mental resiliency to live with a chronic illness and helping those around you understand what to expect and where things are. There needs to be an incredible amount of trust between us when an illness is invisible. My family needs to know that I won't use my illness to "opt out" of things I don't want to do and that if I need to go back to bed for the day it's about
What kind of support do you get from family or friends? *
My family is amazing. My friend circle is a lot smaller than it was before, but the people left are really great.
Have you ever had someone not believe you have an invisible illness because of your appearance? *
Yes, in overt and subtle ways.
Has this been a positive or negative experience? *
Having to justify the hard choices my illness forces on me to some judgemental asshole sucks
Would you care to relate the details of what happened when someone didn't believe you were disabled?
The subtle disbelieving is harder and more emotionally painful than the overt stuff. It's easy to dismiss the ranting guy, but the "friend" that decides you are flaky because you keep cancelling, or the times when someone pushes back on a simple request because "you always use this fake disability to get your way" are really toxic and difficult, especially when they are co-workers or family
How has your invisible illness affected your relationships? *
I am a lot more choosy about who I give my time and energy to. My relationships are significantly deeper and stronger than they were before
Is there anything you are afraid to tell even the people closest to you? *
Does the fact that your disease is invisible change how healthcare professionals treat you? *
It can when I first arrive. I saw a huge shift in how seriously I was taken once I had a diagnosis they understood
What is your best coping mechanism? *
What are you the most fearful of and hopeful for in the future? *
Fistula (no one wants to poop in their vagina), My kids and work give me meaning and inspiration, there is hope in that
What is your favorite swear word?
Is there anything you want to make sure we talk about during the interview?
Like any organization you want to promote or something specific that you deal with.
What is the hardest and/or best lesson your condition has taught you?
How decoupled health and looks are and the really psychotic way society sees the female form